Sometimes I feel like I am in the deep end of a pool, looking up at the colorful bodies swimming around above me and wondering if/when I should go up for air. This past week I feel like the water is getting deeper and deeper and I am sinking further down. Gasping for air and not knowing if I can get back to the top as I sink into the darker water.

When you have depression and anxiety as a normal part of your personality, grabbing high stress events and stacking them on top of each other seems to be the test of how much you can handle before you break.  I hold my head up as high as I can, but I am tired.

I joke around that I had been diagnosed with PTSD after my early stage treatment (I did, I was, its isn’t a joke, I saw a therapist about it – you can get PTSD from cancer treatment and they are showing more and more cases of it these days). I had PTSD from early stage treatment, and now am forever in treatment, I call it TSD. My life with Traumatic Stress Disorder – every day at the hospital is trauma for me.

I finally signed up to see the social worker and am debating whether or not I will join the metastatic support group she put together. I like to pretend like everything is fine, sometimes it works, most of the time it doesn’t.

The nurses at the hospital always freak out because my heart beat is unusually fast if I am in the building. I got an Apple Watch most specifically to watch my heart beat to see if this was always the case – turns out the hospital makes my beep beeps really beep beep.

I am stuck dealing with social security disability now. I don’t want to deal with the paperwork, the lawyers, the headaches. I don’t understand why after 1 month on long term disability I am “getting reevaluated” and have been sent to SSDI. I don’t want to admit to myself I can’t work anymore. I was working a teensy bit when I got home from Europe and then BAM, brain mets and I can’t focus. Two steps forward, ten steps back.

Rebecca Nellis from Cancer and Careers

Rebecca Nellis from Cancer and Careers

I love trying to be involved in metastatic breast cancer awareness, but all of the hate and anger is tiresome. We are the most divided cancer community out there. Love pink ribbons, hate pink ribbons. Love one organization, hate another. I don’t have the energy to be angry, I just want to find a solution that makes it so I can live longer. It is also taking up a lot of my schedule. I need to find a good way to balance my activism with having a life. In the past week I was involved in an event with Pfizer talking about Cancer and Careers, and how companies can support people with cancer (terminal or not).  I managed a Twitter chat (first time, totally freaky, luckily my friends helped and participated). Separately I met some lovely metastatic breast cancer researchers at Huntsman, Jaime and Alana. They are setting up a study that I am really hoping I may get to the place I can access it (they even are adjusting the study design based on our discussion). I am super interested in the study (and supporting researchers who want to focus on metastatic cancer – like Jaime and Alana). You may hear more from me on how you can help support some of the research they are doing later.

Alana and Jaime, these are the women/type of people trying to save our lives. <3

Alana and Jaime, these are the women out there trying to save our lives. <3

I am exhausted from fretting about what treatment I should be on (yes my oncologist decides, but we kind of decide together, it helps when I have other feedback and second opinions when I am dealing with major decisions). We are adding Affinitor after radiation, but my tumor markers are jumping 30 points each 3 weeks, this is scary. My tumor markers now have me back where I was in December, when I had cancer throughout my vertebrae, ribs, clavicle, abdomen, lymph nodes… My oncologist wants to see what the radiation and Affinitor do, but I feel like I may be breaths away from changing treatment because I have cancer growing somewhere in my body – the markers allude to more than just my brain, but until we see it take up residence we just don’t know (unless my brain is a major activity zone for that much cancer which scares the tar out of me).

I didn’t build that blanket fort. I have a lot of blankets (fuzzy blankets are a great gift for a sick person). Lively colorful blankets where I am going to hide until these tumor markers shape up and my brain behaves (mostly bouts of nausea, headaches, and I had one odd incident where I swear I hallucinated – as I said, this brain stuff is scary).

The final determination after the simulation for my SRS (stereotactic radio surgery) that they were prepping for Wednesday, was that I have 4 tumors that will be getting zapped. I still have 4 additional questionable spots (if they grow and act like cancer, we will go in and zap them next). So there is Bob, Frank, Lloyd and Lloyd Jr. My tumors grew 2 mm each during the month we waited between scans, so they are growing and they aren’t slow. Who knows how many buddies they have sent out in search of a home inside my brain while we keep waiting to get this procedure happening. This has been the most frustrating wait since I started this blog about breast cancer – 5 weeks from scan to treatment on my brain metastases.

The mask making process for my SRS treatment. No bacon is making it in my mouth during this process.

The mask making process for my SRS treatment. No bacon is making it in my mouth during this process.

I am tired of pain. I hurt everywhere. I don’t understand why I hurt. I am tired of feeling like a pill popper when I take pain meds, but I don’t like being in pain, it is a weird and embarrassing reality. I have many different medications that help me live life to the fullest, but I feel weird that I need them to live a normal life. The cancer conundrum. We had to x-ray my knee to figure out why it is aching (scans don’t go past your thighs). It keeps impeding my exercise routine. Luckily an X-ray showed bone spurs and not a whole lot of really scary stuff. I feel like my treatment is aging my body. Quickly. Most scans are now physically showing the symptoms of arthritis that I have had since I was a teenager and my vertebrae are starting to crunch down.

I am trying to pull myself out of the water. Mike has been too, but I keep sinking. I am not giving up, don’t read this in a way that makes you think that, I just want people to understand the emotional toll all of this takes. Maybe I need to find some Minion arm floaties.


Author: Mandi

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